Five years on: the space between

I knew exactly how dire our situation was when a trauma counsellor was assigned to us.

Each day she’d come to the intensive care unit and we’d excuse ourselves from Albie’s bedside and enter that white-walled room with her.

She skirted sensitively around the likelihood of our son dying in the coming days, speaking about life and death in endless metaphors – about windows and slivers of light and paths and journeys.

She spoke a beautiful analogy about how our own life is a path. If we zoomed out from it, and viewed it from the air, we’d see how when we were children our paths were very close to our parents. And then, as we grew older our paths went in different directions, and we became closer with our spouse, starting new paths alongside us with our own children.

And she said that some paths, as much as we might want them to continue for longer, just don’t. That some paths are shorter than we want them to be. I knew we were talking in riddles about Albie dying. She spoke about how there was nothing on our path that we could do to make another path longer, as much as we love walking in life beside them. That we are just witness to each others paths, however, long they will be. I think I will always remember that metaphor.

And so for this past week, five years ago, we sat in limbo beside our son. Just waiting to see what his path would do. It was a complete and desperate surrender.

This year, for the first year, we’ve remembered these ECMO days consciously. We’ve celebrated what we’ve coined Family Week – that we are a family of four and not less. That his path still goes on. Somehow, staring this event in the face, and acknowledging it for what it was, rather than trying to push it to the edges of our minds, has been all kinds of healing.

I remember one of the intensive care nurses saying to us, with great compassion, that most parents find ECMO totally overwhelming. And when Albie went on to ECMO, we received messages from parents of ECMO alumni – telling us to just hang in there, that they still remember the experience vividly, but that this too shall pass. I’ve sent the same kind of message, now we’re safely in alumni camp ourselves.

They were the most painful days of my life.

ECMO is incredible technology – but also technology that totally, and painfully, challenged my understanding of where the edges of life and death are.

For all of this week, Albie didn’t draw a breath. A ventilator held his lungs open, but they were stock still. The ECMO machine did the oxygenating of his blood.

And for all of this week, Albie didn’t have a pulse. A doctor, perhaps being more illustrative than she should have been, told us that Albie’s heart was ‘shaking like a jellyfish, rather than beating.’ The ECMO machine did the circulation of his blood.

And for all of this week, Albie was stone cold. He was placed on an ice pad, to keep his body hypothermic to halt any brain damage.

And for all of this week, Albie lay with his chest cavity open. They had to add blood thinners to his blood so it didn’t clot in the ECMO machine, Blood seeped from him. They put those soakers they put in meat trays underneath him.

And for all of this week, Albie lay with sensors all over his head. His nurse would check his eyeballs regularly to see if he was having a hemorrhage.

There was no pulse, no breath, no warm body. My beautiful, beautiful boy. There was little to tell me that Albie was alive – aside from his soulful presence. Many, many times, in the days that we sat with him, I’d talk to him, read him a book, hold his hand. I could sense he was right there with me. I was a mother to my son.

And then, other times, I just knew he wasn’t there – that he’d gone further away from those of us sitting in that intensive care unit. And in those times, I didn’t need to sit by him – I could feel he wasn’t there, and I could step into the corridor. His body was just a shell in those moments and I missed him so,so much.

I remember speaking with a friend in Wellington at some stage afterwards. She told me that during these days, they had gone for a walk on the south coast, near where we lived, and that her almost two year old son, without seeming reason, shot his head up and shouted out ‘Albie!’ ‘Albie!’ to the sky above.

And I wonder about all of that. I wonder if Albie was on the south coast that hour instead of the intensive care unit. And I wonder where else his soul flew in those days, and what else he witnessed, and who else he met – and what drew him back.

I wonder about that.

During these ECMO days, we asked Jason to put updates on the blog. And with those updates, we had a rallying of forces -an army of love and support that wrapped around us fiercely and strongly. Family and friends passed his story to family and friends and soon, myriads of people from across the country and around the planet were thinking about Albie. Praying for him. Chanting for him. Sending positive vibes. Lighting candles. Meditating. Sending intentions. All of it. You might well have been one of the army, for which I am eternally grateful.

I tell you this because I remember a doctor telling us that we’d be looking at weeks to months in Intensive Care and double that in the Heart Ward afterwards, now that he was on ECMO.

And instead he spent just five days on ECMO and another twelve days in hospital after that. He turned around, from the brink, from the real and absolute brink – with a tenacity and strength that I can’t really explain.

And I wonder about all of that.

I think that we witnessed the power of prayer. Positive thoughts, centred on Albie, turned him around. And as I unfurl new understandings of these events, I am slowly connecting as a spiritual being again to something much bigger than myself. For me, that’s not the big wise guy in the sky with the grey beard that I was steeped in as a Catholic child. No. But a spirituality that recognises that all living things are more than mere blood and bone. And that love conquers all. And that we are all connected.

I think when I abandoned the religion I was raised with, my head forgot these universal, pan-religious truths that my heart has always known.

I’m not sure if this is making much sense and my mid-life awakening is possibly a touch more interesting to me than you – so I will stop the rambles.

And come to now.

Because I think the space between – not only refers to Albie’s week between life and death, but also the space we’ve needed as a family between then and now to process it.

And here, with these thoughts voiced for the first time, there is a new realisation in me that maybe I too am in the space between right now. In the space between who I was and who I am yet to become.

Writing sharing and reliving these very hard times tells me you have the strength to do so. I recall reading your blogs 5 years ago sobbing quietly at work while rubbing my big belly thinking what my boy would be like. I knew that what you were writing was probably only the top of the iceberg…so happy you are sharing your experience and recovery process. We will be with you on your journey… love jen

You’re gorgeous. Thankyou for this beautiful comment and your constant support. I TOTALLY look forward to catching up with you and hearing about your recent special celebrations. It sounded amazing. Much love xx

Hi Sarah! You don’t know me, but I was one of the ones praying for you and your boy through those hard days. It was through one of those roundabout internet connections – I won’t go into the details, but Rachel (your cousin) told me about Albie, and I prayed often and waited anxiously for news. So so very happy that Albie fought his way home again! I’ve been a follower of your blog since then. Also since then, we have had a heart kid born into our extended family, and your writing has given me more understanding of the journey of our heart boy and his family than I would otherwise have had. Thank you!

Hi there Donna. Thanks so much for your comment, and your unseen help and support through such a tough time is truly, truly, truly appreciated. Racheal, is one stellar cousin of mine that is for sure! Welcome to the heart kid now in your family! They teach us so very much about the sanctity of life and the gift of it, just in itself. Much love to you and yours, Sarah.